DNA database, the story grows.

Posted: January 14, 2010 in Uncategorized
Tags: , , , ,

I recently wrote about the discovery that (since 1984) Temple Street hospital had retained all newborn bloodsamples submitted to it for the purpose of the PKU/heelprick tests. That means that they have a database of people born in Ireland since 1984! This is an estimated 1.54 million people. This was all following an article in the Sunday Times on December 27th 2009.

The Sunday Times ran a follow up story on January 6th. Their research discovered that “external researchers” had been given access to the database on at least 4 occasions. It has also become clear that at least one request from an “agency” for access to the database was received.

This raises two immediate questions:

  1. If the database was illegal and/or secret how come external organisations were aware of its existence.
  2. If access was granted to “external researchers” did money change hands over this?

I am pursuing this matter further and am in the process of submitting a number of FOI requests and will post results in this blog when I receive them.

However I have also decided to put up a website similar to the one run by the CountMeOut campaign. This website will allow people to send a standard email to Temple Street & the HSE requesting to be notified if their or their children’s data is contained in this database and if this is the case to request that the data is destroyed.

However as I am not a web developer & have not got the time to learn this I am looking for a web designer who will assist me with this on a pro-bono basis. The site is going to be fairly simple and mostly text based but it needs to have a backend that can submit the completed form (via email) to 3 different email adresses simultaneously.

So if you’re a web developer willing to help with this please send me an email!

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Comments
  1. […] at the end of December 2009 just keeps on getting bigger. I blogged about this in December and January and had contact with Mark Tighe, Temple Street Hospital & the Data Protection commissioner. The […]

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